If you have been reading my blogs lately, I have been writing about my pain pump and the journey to get off oral medications. (NOTE: I know that I will have some form of oral medication when all is said and done for flares not controlled by the pump.) I am making great success with my oral pain meds….am only using the short acting form during the day.
This past Friday, I started what will be the most difficult step…the process of getting off of Cymbalta! I say this because of my “cold turkey” experience with this powerful medication; and, I know that, even with my doctors involved with this, I will most likely deal with some of those nasty symptoms.
My doctor reduced my dose from 60 mg to 30 mg. I will be taking one pill per day for two weeks, then I will take one pill every other day for another two weeks. After that, I will be Cymbalta free. (At least, that is the plan!!!)
Today my body is a mess (legs stabbing/throbbing, upper right side is on burning, IBS-D is flaring –cramping and knots, extreme Fibro Fog, etc.) as it starts adjusting to a lower dose. Also doing my best to time my short acting pain med to offset the increased pain.
Those of us with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the like are dealt quite a handful of symptoms. The quantity of symptoms as well as the intensity vary from person to person. Although our conditions manifest differently, we can each relate having experienced the intense “Fibro Brain”…
Examples of “Fibro Brain” or “Brain Fog” that I have experienced:
- Forgetting what I was just told.
- Walking into a room, not remembering what I was doing.
- Forgetting to brush my teeth.
- Unable to find the dog brush, even though I thought for certain I put it away in the correct drawer.
- Walking to the bathroom and forgetting what I needed to do.
- Losing my phone…then finding I had placed it on the bed.
- Sitting down and realizing that I need to brush my teeth.
- Grabbing the lotion instead of the hair gel to put in my hair.
- Using the conditioner as shampoo.
- Using the shampoo as conditioner.
- Unable to focus for even a few minutes.
- Unable to watch a movie at a Theatre.
- Forgetting the note on my phone when at the doctor.
- Unable to find the batteries when staring right at them.
- Looking for my glasses (when they are on).
- Using the wrong name for items.
- Standing at the shower entrance and not knowing what to do next.
Of course, these are just a few of the many frustrating things that we deal with when we have Brain Fog. I find that the best thing to do is just smile or laugh…then do what you remember you needed to do!
Yesterday I went in for follow up with Pain Specialist. He did another increase since I am struggling by 5:00 pm…it takes all my energy to not take an extended release Nucynta. I really think we are getting close to having the usual, day-to-day pain dulled by the pain pump! A huge change for sure!
By no means does this mean that my Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Neuralgia, etc. are cured. The pain pump is doing its job…it is now helping with the pain! Yeah!!
I am still dealing with the other “joys” that come along with my hidden conditions. The best example being the fact that my legs have not been working for the past three days. My legs are heavy, like I have sunk into that gooey mud up to my knees…all my effort is required to stand and shuffle (worse than Zombie walk) to the restroom and back. For those of you with one or a combination of these hidden conditions/illnesses, you will understand!
I am so encouraged though! We have made improvement to one of the toughest aspects of Fibromialgia/Chronic Pain Disorder/etc.; and, that is taking the edge off the horrific, 24/7, 365 day pain!
Looking out the window
I watch the leaves dance
In the gentle breeze…
Moving to and fro
The shades of color shift
From dark to light and back again…
The sun’s rays make the leaves glow
Reflecting the rays like colored mirrors
The radiance adding depth to the color…
The rays permeate the trees
Cascading through the leaves
To dissipate into the depths…
My eyes are drawn back
To those top most leaves
Dancing with the rays of the sun…
The beauty of the sky
The myriad of colors
The sounds of life abound
Even with the ever ringing in the ears…
It is as if I had been in a lifetime slumber
My senses forever dulled
Reaching upwards for help
While overwhelmed in quicksand…
Illness strips us of the familiar
We are thrust into the unknown
Each step taken as with a blindfold
Hands outstretched groping in darkness…
Our medical teams struggle
Conditions and illnesses so misunderstood
Further muddled by myriad of symptoms
Each of us so different from the other…
We search for answers
Yet try as we might
We find health elusive
Stripped from us and locked away
Secreted in the darkest, farthest corner…
We are tried and tested in ways indescribable
As words are a shallow testament
To the inner symptoms that abound
Forever changing and challenging…
My Clinical Psychologist introduced me to a powerful tool to add to my arsenal. It is called “mindfulness”:
“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”
She walked me through a breathing exercise…complete focus on the breath itself…feeling the cooled air entering my nose…feeling it hit the back of the throat…feeling the rise in my chest as the air enters the lungs…feeling a second, subtle rise of the chest before exhaling…feeling the warmth of the air as it leaves the body.
I was then read a short story about washing dishes, from “The Miracle of Mindfulness”….I will share just one paragraph that sums up the idea of mindfulness very well…
“…If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not ‘washing the dishes to wash the dishes.’ What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future — and we are incapable of actually living one minute of life.”
I applied this during my walk outside this morning. I took the time to not just see the sun…but to, really, “see” it! I felt its warmth…the rays touching my skin…the brightness shining…the reflection on the leaves. I felt the slight breeze…ever so gently twisting and turning the leaves in the trees…the slight movement of my shirt being pressed against my skin…the movement of the hairs on my arms…
It was truly amazing!! My focus was dramatically shifted…momentarily transported into the present time…fully embracing and experiencing what was happening around and to me.